As you may know I go to DC every year to ask Texas congressman to sign on to the below letter. Please help further these efforts by going onto http://www.congress.org/congressorg/officials/congress/?district=26&lvl=C&azip= 1) TYPE in your zip 2) get your congressman’s email (left side/ federal) 3) forward on the following letter (cut and paste).
It’s that simple – Again – this will help us get our 20 mill. for NF research. Each year we get closer and closer to a treatment for NF. Please help continue this process by taking 5 min. out or your time to write. Continue reading
I’m looking forward to another great time in Burton Texas. Camp For All. The first day of camp is September 5-7th. Everyone who is going should have all there information submitted by now. I hope so.
Again this year The Texas Neurofibromatomatosis Foundation is having their annunial NF Family camp. Again we are going to have a terrific time meeting our friends from last year, and I know we will make new friends this year as well. Horse back riding swimming games and more. The best part is meeting new friends and sharing stories. It’s going to be a great one and I hope to see you there. Who knows you may see someone playing his music with his newly formed band. I’m not saying you will have to come and see. Some you know might play the autoharp. Just maybe.
Texas Neurofibromatosis Foundation Newsletter
Charles, June and John Lowe raise over one million dollars for the foundation!
Charles, June and John Lowe raise over one million dollars for the foundation! The Lowes have been with the foundation since the very beginning and have been raising funds through a weekly bingo session since 1988. Their devotion and contributions are more than appreciated, they are our inspiration and the backbone of this foundation.
Senator Harkin speaks out for NF! For the past several years, Senator John Harkin has sponsored an “NF Dear Colleague letter.” This letter was drafted to ask that all US Senators support NF research through the Department of Defense Appropriations Committee. These effort are the very reason scientific advancements have been made towards a cure for NF! Please join us by personally thanking Senator Harkin for his continued support.
JULY Summer Family Picnics: Bring the family and meet others in the Houston, Dallas and San Antonio areas!.
June 26, 2008: Support Group Meeting, Dallas, TX
Sept. 5-7, 2008: NF Family Camp, Burton, TX
Sept. 23, 2008: Friends FORE Friends Golf Tournament, Richardson, TX
October 18, 2008: Spam OH! Rama, Irving, TX
2008 Symposium: Dallas, TX. More details to come. Continue reading
Last night, Lou and I attended a special committee meeting to help plan and execute a fund-raiser to help those with NF in the Houston area. The fund-raiser will be held on Tuesday, April 22, 2008, at the Hotel Derek, in the Galleria area of Houston.
I am proud to be Honorary Chairman of this important event and I hope all of my friends can join me in this very worthy cause! Below is a letter from our Houston Highlights Chairman, Ishma Blackwell, detailing the event. It’s going to be a lot of fun!
DOWNLOAD INVITE 2438_001.pdf
Dr. Bart Moore say’s “JUST ASK!” with his new mug and state-of-the-art, homeopathic “JUST ASK!” forehead patch
Yep, my good friend and also doctor, Dr. Bart Moore of MD ANDERSON CANCER CENTER. He is proudly displaying the items that he purchased at the “Just Ask!” online store a short time ago. Not only is he a supporter of NF and “Race Across America for NF”, he’s also a very cool guy to have on your side.
Could you get your doctor to take a photo like this? I don’t think so! What a great sense of humor. Thanks for sharing your photo Dr. Moore! You’re the best!!!
Check out what people had to say about Bart at my Flickr account.
Per our conversation on the phone, I would like to welcome you to the Honorary
Board of the Texas Neurofibromatosis Foundation. It is a privilege to have you on the board.
The foundation appreciates all you have done for Texas NF and NF awareness.
We look forward to working more with you in the Houston area.
Talk to you soon.
Cindy Hahn, M.Ed., Managing Director, Texas Neurofibromatosis Foundation Continue reading
Cowboy Up, America! When a cowboy’s in a pinch, he just tightens up the cinch, spurs his horse and rides right through it, cause that’s the way the Duke would do it. He’d Cowboy Up.
This year it’s going to be another terrific year for the Houston Livestock Show and Rodeo. Just as I did last year, I will be there enjoying all activities for the 2008 show.
This year I plan to see more of the livestock show then I did last year. As for music, there are several performers I want to see this year. There are two I have in mind now, that I want to see Rascal Flatts and Tim McGraw I will see more then one, I hope. All that to look forward too, and I haven’t even started on the great food.
How many of you are planning to go the the Rodeo, and who will you see? It would be a great idea if any of you go, to take pictures and send me a photo and I will make a section for our photos for this year on the blog and Flickr.
“Reggie Bibbs was interviewed on Nov 23, 2007 for Wikinews describing what it is like living with neurofibromatosis and what he has done via his website, blog and other resources to increase awareness of NF.”
Reggie was asked to say a few words and, from what I heard, did a tremendous job!
The Denise Terrill Charity Classics is an organization of volunteers whose purpose is to organize and operate the Denise Terrill Charity Tennis Classic and the Denise Terrill Charity Golf Classic. The goal of these charity tournaments is to raise money for research to find a treatment and cure for neurofibromatosis-2.
Minerva Terrill, a board member of the Texas NF Foundation, presented a check for $90,000 to the hospital for NF research. This is something all of us who are affected with NF can be very excited about.
Great researchers and clinicians are out there looking for a cure and there are great people like Minerva and Cindy Hahn who are doing what they can to raise the funds needed to fund that research. We have a lot to look forward to. Stay tuned! I know more good news is ahead.
Last night I was invited to speak with Net 2 about my website, and neurofibromatosis. Wow! What a tremendous experience it was FOR ME. A great group that was very interested in neurofibromatosis and my campaign. I was able to share what it’s like to live with nf , and how I deal with it. I learned a lot from the group as well as I hope they learned more about nf. I feel blessed that the group received my message. Meeting Net 2 was just what I needed. Maybe if I hang around the group, I can learn more tips about making the perfect site for neurofibromatosis.
“OCULAR FEATURES OF NF I & II”
DR. RICHARD ALAN LEWIS
Profesor, Departments of Opthalmology, Pediatrics, Medicine and Molecular & Human Genetics, Baylor College of Medicine
Dr. Lewis formerly worked with Dr. Vincent Riccardi during the early days of neurofibromatosis discovery, identification and research.
For all of you who missed the NF SYMPOSIUM presented by the Texas NF Foundation, the first presentation is now available by clicking HERE.
Dr. Sharon Plon, Clinic Chief, NF Clinic, TX Children’s Hospital and Associate Professor of Pediatrics and Molecular and Human Genetics,
Baylor College of Medicine presented “Update on Genetic Testing in NF1 and NF2.” We will be posting the other 4 presentations just as soon as we can convert them to the proper format for easy streaming.
Thank you Texas NF Foundation for allowing me to record video and take lots of photos to share on my website. Also, thank you Josh Powers of STANANDLOU Advertising for editing the videos and converting them for digital! It was a Saturday full of great fun, great friends and great information!!! Plus, I made a lot of new friends!!! If you have never gone to one before, I definitely recommend you attend the next one.
I can’t remember the year we shot this but I do remember that it won a national award in the Public Service category at the American Advertising Federation’s ADDY Award in Las Vegas. Gordon Jump, the Maytag repairman in commercials and Mr. Carlson fom WKRP in Cincinnati fame gave out the award that year. Lou had worked with him before and says he was the nicest guy in the world. He was a Mormon and died several years ago.
Raising awareness of the disease their daughter has been fighting since she was 4 years old has been a top priority for Minerva and Bob Terrill of Dallas. Denise Terrill, now 29, has neurofibromatosis, a disease that has caused tumors to grow along her central nervous system, severely damaging her brain stem.
Dr. Bob Terrill, Denise’s father and a dermatologist, diagnosed his daughter’s disease when she was a toddler. Since then, Denise has endured 18 major surgeries, the first of which occurred in 1990 and resulted in her hearing loss. Confined to her bed for almost 10 years, she has lost sight in one eye. She requires a ventilator to breathe and receives nourishment through a feeding tube. Continue reading
NF FAMILY CAMP, CAMP FOR ALL
SEPT 7 – 9, 2007, Burton, TX
Texas NF Foundation is thrilled to bring you the 16th Annual NF Family Camp. The purpose of this camp is for families affected by NF to connect with one another in a place where our commonality is NF. It will be a time to learn and laugh as we make meaningful relationships with new friends and grow closer to our own families. Continue reading
About 10 years ago, I was asked to help participate in a video detailing the history of the Texas Neurofibromatosis Foundation. Our 15th Anniversary was coming up and Bob Hopkins, the Executive Director at the time, wanted to recognize the people who brought us to where we were while also helping educate the new trustees, volunteers and patients about the history of the foundation and all of the ground-breaking work we helped initiate.
I’ve just watched it for like the 100th time and I’m still learning more stuff!
The Texas Neurofibromatosis Foundation was founded in 1978 by an Austin mother whose son had NF, a genetic disorder that causes disfiguring tumors. While the disease is not uncommon, most people do not know of the disease, partially because people who have it tend to shield themselves to avoid public ridicule.
During the ten years after it was founded, the families involved with the foundation raised money any way they could – from walkathons, skateathons, garage sales, and all the other means “families” use to help their own.Relief for the group came when the Dallas and Houston NFL alumni adopted their cause. Annual golf tournaments were established to support a small office in Austin and raise limited funds to support budding research projects. Continue reading
- 2008 Houston Highlights
- A MESSAGE FROM REGGIE
- abc news
- About Me
- ADDY Awards
- Astros Game
- Denise Terrill Golf Classic
- Emily's Name-My-Baby Contest!
- Favorite Places
- Friends of NF
- Friends with NF
- Greg Gorman
- Houston Art Car Parade
- houston astros
- houston livestock show and rodeo
- Houston Roller Derby
- Houston Texans
- International Festival
- Laurie Selzer-MNI
- M.D. Anderson
- Martina McBride
- McKee Street Bridge
- Medical Resources
- national doodle day
- NF Bulletin Board
- NF in the News
- nf inc
- Porch Swing Pub
- Some People
- Texas NF Foundation
- TEXAS RENAISSANCE FESTIVAL
- Valentine's Day
- Web Technology